Empowering the Special Parents of Children with Special Needs

My apologies -- you haven’t heard anything from me on this blog for the last
3 weeks.

Reason?

I’ve been out of intellectual shape since Feb 4th
and it was only yesterday’s afternoon that I finally felt that my head was back
to the levels of performance that I am used to and satisfied with.

What happened?

I’ve been doing the European assessments day-in day-out
continuously for 2 ½ weeks over a nasty cold and it took me another week of
dull existence when I was unable to generate anything written whatsoever before
I finally got back to a decent intellectual form.

Short note on the side:

No, Europeans are not “privileged”
to have this once a year live assessment; and Americans and Australians, i.e.
mother tongue English speakers, are not “disadvantaged” to be the first ones to
experience the new format of ABR, which relies on a distant support and
especially on comparison reports. The simple necessity of maintaining such a
once a year assessment in Europe stems from its’ multilingual nature, where we
do not have the resources to have information and explanations converted into
French, German, Danish, Dutch, Spanish languages etc separately. Most of the
European ABR families do communicate in English but it’s obviously not their
mother tongue, which makes deep understanding difficult when it comes to
specific anatomical terminology and more complex ABR concepts. So until today
the only solution for a number of families whose English is not so great is to
have direct pointing through the live demonstration as the main tool of
explanation– something along the lines: “This muscle [pointing with a finger
and avoiding naming] should get released; this bone [another finger pointing]
has to drift here; doing a movement in this place [more pointing] is a wrong
place etc.”

I maintain what I said many times
before: I do think that such a solution is a temporary crutch – the learning
value of live assessment is lower than the learning value of a properly done
comparison reports and consistent referral to a knowledge base.

Conclusions?

Far reaching (at least for myself)…

First of all, I have to acknowledge and face a simple fact –
my own shape is deteriorating.

I feel like I am half or maybe a ¾ of ‘a man I used to be’
even 3-4 years back.

For a while I tried to fool myself, looking at the episodes
like this as aberrations and finding excuses but if I put together this dismal
February shape with my complete deflation in November that followed the 5 week-
long tour in the Fall 2009– previous leg of European assessments; teaching
visit to Montreal for ABR Canada trainers; and 2 long conferences in
Netherlands – I have to acknowledge facts, however unflattering they are. One
might say that being out of form for 2 weeks after 5 weeks of non-stop intense
action through changing climates, places and time zones is not too bad ...
True, I guess by ‘normal’ standards – however, everything is relative, – I used
to be able to do even more than that with much greater ease and with only minor
dips in form afterwards.

Everything that I have done in the past has been a product of
a personal overdrive based on a firm conviction that ABR is my mission and duty
and I can’t allow myself any downtime or slack. I’ve always rested just enough
to be able to work – any further rest or detour from working commitments
brought an immense remorse about the wasted time.

That overdrive has been my operating mode ever since I joined
my father back in 1993. But I realize that this mode is unlikely to work in the
future.

Now I have to face a new reality – I am punctured a lot
easier; my intellectual form dips lower when I am punctured physically; and it
takes more time to recover back to intellectual shape that I am internally comfortable
with.

continue reading by clicking

Obviously this realization leads to a number of far reaching
consequences and a lot of difficult questions to be asked.

The first on the list: my current ¾ shape– is it for long?
Even if I divert some effort to self-preservation – can I expect this current,
although lower standard to last for a number of years or shall I be
anticipating a continued decline?

All this leads to a really big question for me: What amount of ABR
work I am going to have enough time for to complete and to nurture whilst I am
still in reasonable shape?

Until recently I somewhat rationalized that time was limited
but still had the urge for enthusiastically venturing onto the new paths of
intellectual exploration – digging further and deeper into the unchartered
territories in search of better tools for you rather than focusing on the
conversion of existent knowledge into a better user-oriented system.

It’s this quest for knowledge, which made the very emergence
of ABR possible, but on the other hand, this same mentality of ongoing
exploration is responsible for the organizational and delivery flaws that all of
you faced – incompletion of teaching materials; frequent revision of previously
learned skills, ambiguity in explanations and demonstrations; significant
friction in the customer support and service etc.

I do realize that’s a lot of “I, I, I” in the paragraphs that
you have just read – but I do hope that you can see that our interests are
aligned.

Whatever I do in advancing the 'ABR mission' is based on a simple
premise – a rehabilitation system that has any future for the kids with
cerebral palsy has to make very specific choices within the Octagon of Fundamental Dilemmas for Cerebral
Palsy:

I am going
to briefly outline the dilemmas (this subject deserves series of in-depth posts)
without going into details – I am sure
you’ll be able to figure out the choices that I believe are the right ones.

I guess this one is
self-explanatory. What is the choice of the key targets: Improvement of the
weak core or the attempts to alleviate the challenges experienced by
musculoskeletal periphery.

4.Right place/right movement vs. the wrong place/wrong
movement. This is a very important dilemma: Are the fakes acceptable? Are you
allowed to ‘cheat’ through fake functionality of wrong place/wrong movement,
and more importantly – Does such a ‘cheat’ benefit a child’s development
long-term or it costs more than it brings?

5.Strengthening vs. release and realignment.

What is being chosen? – Strengthening
of the weakest links or the attempts to weaken the abnormal uncontrolled
spastic “strength”/ to forcefully re-align the distorted skeleton

6.Biomechanical vs. Neurological.

What is a better avenue? – Focus on
the ‘nuts and bolts’ or blame the ‘wrong’ signals? In other words –improving a
car via deliberate biomechanical work vs. trying to teach a ‘driver’ via ‘teaching’
signals

7.Nothing forceful vs. invasive.

Well, I covered the ‘doves’ vs. the
‘hawks’ dilemma earlier in this blog

8.Myofascial paradigm vs. myotendonal

Sticking to an old myotendonal
paradigm (simplistic but convenient) vs. Embracing new myofascial paradigm (complex
and challenging established routines)

And of course another key choice is the one of a key figure/
key place:

·Who is a key figure – Parent vs. outside ‘professional’…

·What is a key place – Home environment vs. ‘Treatment’/
‘Rehabilitation’ facility

ABR is the only system that is based on a specific set of
deliberate choices in respect to each of these fundamental matters. Putting it
simply – we choose ‘answer a)’ for all of these dilemmas.

It’s important to understand that none of those elements can
be thrown away – all of the cornerstones are essential.

Sure, there are some methods where a couple of elements from this
Octagon of Fundamental Dilemmas for Cerebral Palsy are figured out correctly
but that is too little to compensate for being on the wrong side of the
remaining fundamental dilemmas.

Having said this, I am far from claiming that ABR is ‘perfect’
– it is still in an infancy stage, so flaws and imperfections are countless.

And that’s what I feel an immense responsibility for – to
bring ABR from this infancy to at least ‘a toddler’ phase reducing those flaws
of delivery and presentation to a level compatible with its ‘unaided survival’
and ability to stay afloat in the mainstream healthcare regardless of my own abilities and
contributions.

I feel obliged to reinforce the frame and format of ABR making
it strong enough to provide the foundation and momentum sufficient for further
tweaks and improvements coming from new developers and practitioners.

That is quite a task and frankly speaking, I am far from
being confident that I am capable of ‘delivering the goods’.

You see, there are people who are naturally good in ‘flow and
flair’ and there are the ones who are inclined to be ‘frame and format’ persons.

Obviously, naturally I belong to a first category. Polishing
the ‘known’ things to perfection is not my strongest character trait. I get
lured easily by the urge of the new developments with the expectation that the
benefits of the progress will outweigh the imperfections of implementation.

I am very well aware of this matter and have been trying to
become a better implementer for a number of years. It worked to certain extent,
but on the other hand, I never fully committed to implementation due to the
deeply rooted inner feel that I still had time ahead and hence a certain wiggle
room to shoot for ‘better set of building blocks’ before really committing to
construction full time and full devotion.

I guess this time has come. I am realizing the finite nature
of time more and more clearly and this reality forces me to redirect the focus
in ABR development to the ‘Frame and Format’.

How well will it work? How long will take me to reach a
decent level of implementation competence? – Unfortunately, I have no answers.

I can only say that I am trying my best and will continue to strive
for it for as long as I have any capacity left in me. But obviously, I am not
going to be able to do that alone.

First and foremost I am having a great urgency to understand
whether I am on the right track and I need your feedback more than ever.

Classic terminology calls you ‘early adopters’, I prefer to
think of you as true pioneers, people who embarked on a journey to frontiers
with amazing bravery despite having very little information to base your
decisions upon and not much of a back up and support throughout this journey.

So far I haven’t mentioned the ABR centers yet –naturally
they are instrumental in this build of ‘Frame and Format – however, one should
realize that this transition to a new role is far from easy for them as well.

The ABR development until 2007-2008 was very much a
relentless innovation – every few months things changed: introduction of new
techniques, tools, concepts, etc. The centers tried their best to adapt to this
barrage of new stuff and to deliver it to you. It wasn’t easy since everything
new came in raw, without a clear curriculum, teaching protocols etc.

Local ABR centers are on the first line of interaction with
you and hence experience the most of the pressure. I often hear the complaints
about the local ABR centers when families point out flaws in a center’s ’customer
service’ performance. Well, these complaints might be justified to certain
extent, but one also has to realize that the centers are in a much squeezed
position – between raw, half-baked ABR innovations coming from me and the
necessity to deliver a relatively smooth and straightforward service to you. So
for a long period the centers operated in continuous catching up mode, which is
very stressful, especially when all of the ABR families are connected worldwide
and expect any new teachings to become available everywhere at the same time.

Unfortunately, that was not realistic. I do not just sit in
my office quietly designing new techniques and then once the new tool is ready –
call everyone up and present the new development to the trainers. Reality is
very different – ideas emerge and then get improved through implementation.
Every time I teach it to someone, or when I observe the flaws in performing the
new technique/exercise – I look for a different angle and sometimes overhaul
the entire explanation/ teaching protocol altogether. As a result, there is an
inevitable delay and certain dissonance between the teachings done by different
ABR centers.

It takes time before the new technique or even an exercise is
stabilized and enters a stage of being well-established, only then the
curriculum becomes standardized between the ABR centers with only minor
variations in teaching styles among the trainers.

By 2008 the ‘classic’, i.e. “3Q” ABR technique based on
Quasi-static, Quasi-isotropic and Quasi-spherical principles (hence the 3Q)
very much stabilized and the barrage of new technical developments from me
somewhat ended, allowing the local ABR centers to catch some breath and to work
on solidifying the internal protocols.

I have added the page to this blog with the in-depth
description of 3Q principles identifying the ‘classic’ ABR technique.

When I was recording the ‘Lunar New Year Address 2009’ – I
actually expected that in 2009 we’d be able to focus on the development of
‘Frame and Format’ since I expected both having extra time for that and
thinking that the ABR technical curriculum had stabilized.

Frankly speaking, those expectations for 2009 turned out to
be quite far removed from reality for a number of reasons:

·I’ve been suppressing the self-education to levels
below my substantial natural ‘knowledge appetite’ for a number of ‘assessment
frenzy’ years (2005-2008) – so I enthusiastically engaged onto attending the
conferences and intensive book reading.

Trouble is –new knowledge always
leads to the new ideas and new developments – a good thing long-term, but
clearly off-focus from improved implementation.

In 2009 I was able to catch up with
the bulk of recent developments in myofascial theory –that are really, really
exciting and reinforce ABR concept immensely;

as well as to get the first hand
experience of conferences on Cerebral Palsy, which on the one hand highlighted
ABR ‘dovish’ loneliness in the ‘hawkish’ CP world; but importantly that really
alerted me to the role of GMFCS curves as the ‘paths of destiny’ for a
brain-injured child and also shown the most promising paths for building
bridges between ABR and mainstream.

·Super-Soft Ball Rolling Technique – just when I semi-happily
thought about “the end of the new exercises” in ABR – things changed radically.
What have started as an accidental discovery/tryout with a modest goal of
auxiliary relaxation tool with intended time budget of 10-15 min/day has grown
into a technique, which has equal if not larger value than the original “3Q”
‘classic’ ABR technique.

·I enthusiastically undertook the massive
Weight-Bearing Matrix project with the idea of consolidating all of the
existent ABR tests into a smooth matrix that integrates them sequentially
allowing to predict/illustrate every next stage in Weight-Bearing development
and to detect the fakes from the “trues”.

Later on I supplemented it with a
bunch of supplementary matrices – Segmentation Matrix; Fascial
Compartmentalization Matrix etc.

Definitely the May-June 2009 period
when I worked on these assessment matrices together with Andrea intellectually
was a high point of the year, but the sheer magnitude of that project was too
large to bring it to a full completion within a summer time frame, so we had to
scale it down and bring the inclusion of the improved tests interpretation into
the assessment protocol and comparison reports.

·There were a bunch of smaller new projects as well,
including the super detailed 4.5 hour case study of typical ABR-based progress
path – example of a development evolution of the Russian quadriplegic boy within
2 years of ABR work that you have the opportunity to watch on Vimeo video
account. (It took me about 3 weeks of net time to do that case study.)

·I also made an attempt to produce a video course on
the classic 3Q ABR technique – which ended up with good 15 hours of recorded
material describing it in detail if only as the introduction and demanded tons
of editing. However, the arrival of the Super-Soft Ball Rolling Technique
really changed my perspective of priorities, so I decided to freeze that
project for a while and start with the Ball Rolling videos first.

Put together with the fact that the first half of 2009 still
had the assessment tours worldwide as usual from Australia to Canada – the year
2009 was extremely intense and fruitful if one looks at the reinforcement/
expansion of ABR concept and introduction of the new Super-Soft Ball Rolling tools
that addressed the major gap poorly addressed by the 3Q ‘classic’ techniques.

However, all that innovation had a major toll on the
implementation.

The ABR Centers became caught between two mentalities: the
old one – catching up with the new developments that I dump on them –Super-Soft Ball Rolling and changes to the
assessment protocol; and the new one – increased role of a local ABR center
with the transfer of the comparison file reports.

Being the largest of the centers translated into the largest
volume of work necessary for the preparation of the comparison reports; at the
same time we experienced the need for significant re-distribution of assignments
between the personnel.

Departure of Gavin – newlywed family man – to Argentina and
the need to re-route Annie’s efforts away from managerial and increasingly
towards the case analysis coordination called for the recruitment of new
personnel, which was done in the summer.

Unfortunately, that experience turned out into a real
struggle. All the candidates looked really promising but then family
circumstances and hidden character traits started to pop-up, so by the end of
the year we ended up with just a single new addition – Erryn. She’s doing great
and we are happy to have her on board but she is only a single person out of 5
people who joined ABR Canada during the summer hiring. Several months spent by
our core personnel on the training of new recruits at the expense of other
matters, were simply lost. Frankly, that was really frustrating; especially bearing
in mind our hiring worked a lot better earlier on. We brought on board a number
of great people in 2006-2008 and they all became an indivisible part of ABR
Team.

I am not complaining – rather bringing the perspective.

So 2009 was the year of mixed blessings and certainly the one
of major transitions.

When I look back I am really quite confused emotionally:

·On the one hand, the mere introduction of Super-Soft
Ball Rolling Technique alone is such a major milestone that one should consider
2009 a major success.

Fact is, Super-Soft Ball Rolling
Technique has a lot lower entry barrier than a classic 3Q ABR technique and it
is a lot more user-friendly – so I expect that in the future the entry tiers of
ABR program will be associated with ‘Ball Rolling’ making it into a ‘signature’
public image of ABR rather than a “pile of towels” that we are associated with
today.

Super-Soft Ball Rolling Technique
(SSBR) really covers a huge spectrum. If one thinks of low yearly time budgets
like 100-200 hours/ year – then it is the Ball Rolling that provides the best
value. For a more committed and skilled ABR providers, who deliver 400+ hours
per year it has a massive value as well –being complementary with the classic 3Q ABR technique.

I recently used an analogy that
many people found helpful: if ‘classic’ 3Q ABR technique (machine included) is
about rebuilding the number of floors and their divisions within a collapsed ‘skyscraper’
of a body then Super-Soft Ball Rolling Technique focuses on strengthening the
walls…

·On the other hand, due to the innovations “the pile of
building blocks” that needs to be assembled into a coherent ABR construction –
has only got larger. Hence a paradox – the ABR elements are better and there
are more of them but at the same time it also means there is more work ahead before
arriving to a certain stage of completion on the way to making ABR into a
sustainable replicable system.

That’s exactly my challenge – I am
excited for all the new and better things that we can bring to people but at
the same time all these new things belong to a ‘Flair and Flow’ creative side,
which is not exactly our main constraint.

ABR’s main constraints are in the
extremely poor ‘Frame and Format’ matters, and 2009 haven’t brought much of the
progress in that critical department.

That realization is accentuated by
my growing feeling that the clock is ticking and I can no longer dismiss it and
shift into a background. As I said in the beginning of this outpour – I am at
best a ¾ of a ‘man I used to be’ 3-4 years back.

So these are some of the main Painful Lessons of 2009.

So far, they mostly result in questions with the answers yet
to be navigated to.

Frankly speaking, I am far from sure that such an open
outpour that I’ve done over the previous several pages is a good communication
avenue, but I do feel the urgency of the moment and I really want to connect
and find a better sync with you – both a ‘collective’ you and a variety of
individual ‘you’ and I am prepared to work in scrapping off those formal layers
of ‘customer relationship’ in order to find the resonating wavelength. So I am
prepared to amp up the level of openness and straight unequivocal talk.

In the following parts of ‘Painful Lessons’ series I will try
to dig deeper and formulate and ask the questions in a most direct way leaving
as little as possible for second-guessing and ambiguity….

P.S.

I would strongly appreciate if you’d take your time to re-watch
some of the 2009 ‘New Year Message’ video – especially parts 4, 3 and 2...

Comments

My apologies -- you haven’t heard anything from me on this blog for the last
3 weeks.

Reason?

I’ve been out of intellectual shape since Feb 4th
and it was only yesterday’s afternoon that I finally felt that my head was back
to the levels of performance that I am used to and satisfied with.

What happened?

I’ve been doing the European assessments day-in day-out
continuously for 2 ½ weeks over a nasty cold and it took me another week of
dull existence when I was unable to generate anything written whatsoever before
I finally got back to a decent intellectual form.

Short note on the side:

No, Europeans are not “privileged”
to have this once a year live assessment; and Americans and Australians, i.e.
mother tongue English speakers, are not “disadvantaged” to be the first ones to
experience the new format of ABR, which relies on a distant support and
especially on comparison reports. The simple necessity of maintaining such a
once a year assessment in Europe stems from its’ multilingual nature, where we
do not have the resources to have information and explanations converted into
French, German, Danish, Dutch, Spanish languages etc separately. Most of the
European ABR families do communicate in English but it’s obviously not their
mother tongue, which makes deep understanding difficult when it comes to
specific anatomical terminology and more complex ABR concepts. So until today
the only solution for a number of families whose English is not so great is to
have direct pointing through the live demonstration as the main tool of
explanation– something along the lines: “This muscle [pointing with a finger
and avoiding naming] should get released; this bone [another finger pointing]
has to drift here; doing a movement in this place [more pointing] is a wrong
place etc.”

I maintain what I said many times
before: I do think that such a solution is a temporary crutch – the learning
value of live assessment is lower than the learning value of a properly done
comparison reports and consistent referral to a knowledge base.

Conclusions?

Far reaching (at least for myself)…

First of all, I have to acknowledge and face a simple fact –
my own shape is deteriorating.

I feel like I am half or maybe a ¾ of ‘a man I used to be’
even 3-4 years back.

For a while I tried to fool myself, looking at the episodes
like this as aberrations and finding excuses but if I put together this dismal
February shape with my complete deflation in November that followed the 5 week-
long tour in the Fall 2009– previous leg of European assessments; teaching
visit to Montreal for ABR Canada trainers; and 2 long conferences in
Netherlands – I have to acknowledge facts, however unflattering they are. One
might say that being out of form for 2 weeks after 5 weeks of non-stop intense
action through changing climates, places and time zones is not too bad ...
True, I guess by ‘normal’ standards – however, everything is relative, – I used
to be able to do even more than that with much greater ease and with only minor
dips in form afterwards.

Everything that I have done in the past has been a product of
a personal overdrive based on a firm conviction that ABR is my mission and duty
and I can’t allow myself any downtime or slack. I’ve always rested just enough
to be able to work – any further rest or detour from working commitments
brought an immense remorse about the wasted time.

That overdrive has been my operating mode ever since I joined
my father back in 1993. But I realize that this mode is unlikely to work in the
future.

Now I have to face a new reality – I am punctured a lot
easier; my intellectual form dips lower when I am punctured physically; and it
takes more time to recover back to intellectual shape that I am internally comfortable
with.